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Three Special Birthdays

Three Special Birthdays

Today is my cousin’s 21st birthday — a day of celebration for any young adult, but especially so for someone whose parents were once told she would never see the age of 18.

At five years old, my cousin was diagnosed with Duchenne Muscular Dystrophy, a rapidly progressing degenerative disease that most often affects boys.  She is one of few girls with this awful disease — an exclusive club that no one wants to join.

In less than three weeks, another wonderful girl, Gwendolyn, turns two — a major milestone for any child, but especially so for a child with Spinal Muscular Atrophy (SMA) type I like Gwendolyn. SMA, a terminal degenerative disease, is the #1 killer of children under the age of two.

And three weeks ago, my own children turned three, healthy boy / girl twins who rock my world. It’s my experience as a mother which brings me back to my cousin and Gwendolyn every day.

Nothing prepares you for the intensity of emotion with newborns. I now know the meaning of unconditional love. I can still remember the panic I felt late one night in my twins’ first week of life when I realized they both had some kind of eye infection. These were my babies, my brand new precious babies. I had no idea what was wrong and felt so desperate. Thankfully, a few minutes online with Dr. Sears helped me figure out that this was common — trivial, really — and simple to treat at home, and that knowledge and ability to make my babies better was so empowering.

So imagine how it feels to be told that your precious baby has a degenerative, terminal illness and there is nothing you can fundamentally do to save her life. You can keep her as healthy as possible, you can fight every day to keep illness at bay, but at the end of the day, your baby will die before you. I’d take an eye infection any day. Every day, in fact, as long as my babies would live.

I can’t even begin to imagine the pain and desperation — I am thankful every day that I don’t truly know how it feels. But what I do know is that my aunt and uncle, and Gwendolyn’s parents, have channeled that panic and anger and profound sadness into amazing progress toward fighting these diseases, and for that they are super heroes.

My aunt and uncle founded an annual fundraising walk to support MDA. They are amazing and fierce advocates for my cousin, and they treat her as they do everyone else — as a human being who deserves all of the respect, dignity and opportunities as everyone else.

And Gwendolyn’s parents have not only thrown themselves in to learning everything possible about their daughter’s disease and how to best treat it, but they have also fully committed to doing everything in their power to finding a cure for SMA, which is closer than many people realize.

The National Institutes for Health have chosen SMA as a model disease for research, and estimate that with adequate resources a treatment or cure for SMA could be found within five years. Not only that, but any progress made toward understanding and treating SMA will directly benefit understanding of Duchenne MD.

Gwendolyn’s parents started the Petition to End SMA soon after receiving their daughter’s terrible diagnosis, and their petition has just reached 70,000 signatures! This petition targets Congress in support of the SMA Treatment Acceleration Act, which would provide the federal support needed to find a cure for SMA and hopefully aid in the search for a cure for Duchenne Muscular Dystrophy and other diseases.

So what I want to do for my cousin’s birthday and Gwendolyn’s birthday, and in honor and memory of all of the beautiful children who have suffered from these diseases, is help reach the goal of 100,000 signatures to end SMA.  If you have 30 seconds to grant a birthday wish, please sign the petition today. It would mean the world to some very special birthday girls and the super heroes who love them.

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7 comments

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2:35PM PST on Nov 14, 2012

I just thought this petition about DMD might be of interest to the author of this piece and to the commenters:
http://epetitions.direct.gov.uk/petitions/37675
(I would be tremendously grateful if you could possibly sign and share it!)

I’ve also collected some beautiful videos about DMD that people can share too if they want, in the hopes of getting other people to care! :)
http://www.youtube.com/playlist?list=PLIVnkXmUlgpTdTQP2c1EcXgDNYDWPjwcJ&feature=playlist-comment

Hope all the beautiful boys and girls with DMD and their families are doing ok!
xxx

4:55AM PDT on Sep 16, 2009

Feliz aniversário e a luta continua.
Paz e Amor
Su

8:58PM PDT on Sep 15, 2009

Happy 21st Birthday to a special young lady.
Love and best wishes from Australia

4:09PM PDT on Sep 15, 2009

I don't like animal testing at all, I understand people's opposition to it. I don't buy any consumer products tested on animals. But what I've come to realize in life is that we all do the best we can with what we have. And as a mother of two, I can tell you I would give every penny I had to a scientist who was conducting promising research toward a cure for my dying child. If I could choose a researcher that didn't work with animals I would, absolutely. And I think we all need to work toward a world without animal testing. But we don't live there right now, unfortunately.

I do understand how passionately people feel about this issue, absolutely - I have a background in conservation biology, I have been a vegetarian for decades now, I don't think we should ever test on primates. But unless you have walked in the shoes of a mother or father who is watching their child slowly die, I don't think you can honestly say what you would do.

2:36PM PDT on Sep 15, 2009

Menghini L - yes, it does sound cynical. I can tell that you don't have a daughter who is very ill and not expected to live - or a son, or anyone really close who could benefit. Actually, it sounds closer to heartless and hateful. You might not give any money, and that is your right - but to announce it on a site that celebrates the life of a 21 year old who was expected to die and might have without any research - is pretty snotty.

12:44PM PDT on Sep 15, 2009

Well, I may sound cynic, but I'll say what it needs to be said anyway. I'd never give money to save a little girl if that meant the doom of dozens if not hundreds of monkeys. And you know that is what it will happen, it's just the way the "science" goes these time. In one word: vivisection. You can't say it's compassionate.

3:49AM PDT on Sep 15, 2009

Happy 21st Birthday to a very special girl.
Love and hugs
Voula.

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